Tuesday, October 22, 2013

Confessions of a New Tubie

I'd just like to make some confessions real quick, that I'd really like to not have anyone know I said them, so I'm gonna hide behind my blog and say them anyway because no one knows who writes this, right?

1) When I was in college, and I was doing observations for classes in a severe and profound classroom I witnessed my first bolus tube feeding. This almost made me want to not be a special ed teacher or deal with special needs kids ever again because it seemed so disgusting to me. I was literally gagging. I don't know why. I had to leave the room because I loved the kid, he was one of my favorites. And I didn't want him to see me upset. This student was also my first student that passed away. I also associate that with tube feedings. I've been forever grateful I never had a student that had a tube feeding, I didn't think I could handle it. Now I have one. Joy.

2) It's almost a Shakespearean irony that we did this whole hey we're gonna give you a feeding tube so that you don't fall asleep when you eat so you can function better at school and in the process it forced me to go on leave from school because I missed too many days from the hospitalization and complications and recovery.

3) I'm really, really mad at my surgeon and my GI doctor for not helping me out in resolving my issues. Right now I can only get a maximum of 400 calories a day through my tube, and I can't eat by mouth much. That's not livable docs. Duh. And I really, really miss being able to eat whatever I want whenever I want (minus the stupid like issues I have while eating of course, but some food is better than no food).

4) Sitting around your room and watching TV all day sounds like living the dream, it's not. Trust me. I'm really bored, but then I get up and try to do things and it wears me out. So then I go back to doing it.

5) Bile is really, really disgusting. Especially when it is coming out of your tube. Onto your clothes. And it smells. And it's warm. And it makes me almost throw up. And this happens every time I have to access my tube for meds (at least 3 times a day) or to change the bag (1 time a day) or take a break for any other reason (5-6 times a day). And it's not normal. I also for the life of me cannot understand why no one is concerned about the fact that this is happening except me, my mom, and my support groups online.

6) I have had 3 separate nurses, un-prompted, tell me my "feeding tube" is actually a central line. I cannot wait until it gets changed to whatever the crap it's supposed to be so hopefully some of my complications can go away.

7) After having colitis for so many years and having to deal with the constant always having to rush to the bathroom all the time, words cannot express how many times in the past 3 weeks I have wanted to be able to go so bad. Because hey, when your intestines are paralyzed you can't do that and it really, really sucks.

8) I firmly believe that all dietitians should have a NJ tube at one point in their schooling so that when they are telling their patients that it isn't a big deal to have to go get it re-placed and to go out in society with it and deal with the constant annoyance of having it in your face for 24/7 they know they are lying.

9) I really do like that I can do some meds through my tube now. Especially the pain ones. They hit much faster that way. As long as they get absorbed and not spit out by the evil stupid backflowing tube.

10) No one really asked me or has asked me how this makes me feel emotionally minus like 3 people. Guys, this is life altering stuff. Food is so emotional. Especially for someone who spends most of her TV viewing on Food Network, is a dietetics student, loves to cook. This is hard. And it sucks. But no one asks you. They all just tell you you are being anxious and over reacting and it's no big deal and just wait 6 more days to see the doctor. That's just not acceptable to me. Why should it be? I don't understand. But I guess it's not up to me to understand right now.

11) That's an odd number to end on, right? I really hope my list of confessions of a tubie can begin to be more positive after my doctors appointment with my GI doc tomorrow. Hopefully when he sees it for himself he will come to his senses and do something about it and get it changed out sooner rather than later. Hopefully he will listen to me, he hasn't yet.

Saturday, October 19, 2013

And if not He is still good...

I have been on a MAJOR blog hiatus and I apologize. Seriously. I do. I know I have loyal readers and I know I have readers that aren't so loyal, but I like to think they are. Anyway. Sorry about the break.

I had my J tube surgery on October 2nd and let's just say the outcome was less than desirable. For multiple reasons. And honestly as I was telling one of my friends the other night, the number one reason that I haven't been writing is because even though life with a chronic illness sucks and is down right terrible and I tell the 100% truth in my blog and I don't sugar coat it, I at least try to most of the time put a positive non cuss word spin on it...and honestly for the past 3 weeks I didn't have me in it to do it. I couldn't find anything positive. I couldn't see past the pain, past the destruction of my body or my life, I couldn't see Him still being good. Because I'm an idiot. But I couldn't.

Until things started turning around about 5 pm Thursday night and have kept getting better and better. And trust me, they're still really painful, but no where near where they were even Thursday morning. so we'll take it!!!

So here's the hopefully quick and dirty summary of what did happen to make it so rough to begin with and why now all the sudden I can see that He really is still good. And if you haven't figured it out the He is referring to is God. And if you would like a reference to the title it would be Daniel 3:17-18 where Shadrach, Meshach, and Abednago are getting thrown into the furnace and are telling the people doing so that God will deliver them and even if He doesn't they still won't serve their gods and idols because our (my) God is still good and deserves to be the only one served. So now back to my firey furnace of a couple of weeks.

So before the surgery even started the surgeon and I got into it because I just so happened to have a friend that had a J tube put in by the same surgeon 6 weeks prior and hers fell out 6 days later because he forgot to inflate the balloon so needless to say I was a little nervous because on top of having the tube put in I was also having 3 biopsies done. 2 of those biopsies were being done on my stomach and small intestine and because I have Ehlers-Danlos syndrome (a connective tissue and muscle disorder) it was known that taking the biopsy from those locations could paralyze my GI tract if he wasn't careful enough and I already knew he was a careless surgeon so I was paranoid. But he wouldn't do the surgery until we hugged and made up so I did and went in and was ok.

I came out of the surgery and didn't wake up til almost 8 hours later and found out (on Facebook) that I had to get a different device and would likely need it replaced soon because it was not a normal J-tube. The surgeon came in soon after that and confirmed that I would have to have it replaced in about a month. This would mean that I would need to miss even more school and I was already on my second week and I was only supposed to miss 2 days if you remember right from a previous blog post. And my tummy and leg I'm pretty sure are scarred for life.

Anyway, I stayed in the hospital for 3 whole days from the surgery when I was just supposed to stay overnight and they wanted to keep me longer, but I was ready to go home. But we couldn't get control of my pain or get me to go to the bathroom (TMI I know), or get me to walk around much because of the thigh muscle biopsy, or anything else. But I went home. As soon as I got home it all went down hill from there. Who would've guessed having a pain pump with my own button to push whenever I desired and IV nausea meds made things so much more tolerable. It became very apparent, very fast that I wasn't going back to school anytime soon (at least 2 more weeks) which would put me on 4 weeks being out of classes when I'm supposed to be out of class only 2 days. So on Sunday, October 6th I made the decision that something had to be done about school.

But I kept it a secret until Tuesday in case a miracle happened. Which it didn't so I emailed the profs and we started figuring out the best options. And it took all week of me waiting and not knowing, but this ended up being one of the best ways of God showing how He is still good. He was telling me no because He was telling me I couldn't finish school right now, but He made it ok. He might of made it better. But don't tell. Technically, if we have to leave the program for any reason we have to reapply and all that jazz. Well, we are working it for me a special way. Right now I'm in 3 classes (2 program and one online that I need to graduate but isn't a program class and working on my thesis). Next semester I was going to have to do my Internship and had to sign up for an in town internship (since it's hard to travel because of my health) basically as soon as I got in the program because they are hard to come by and another online class. So in order to avoid me having to pay for as many credits over again, allow me to not be as bored when I start feeling a bit better and cut down on as much as I'll have to do next year this is what they came up with.

This semester instead of completely withdrawing from all my classes (medical withdraw), I'm staying in my online epidemiology class since I don't actually have to go to school for that and in my thesis credits. Next semester I'm still going to take the online class that would go with my Internship even though I'm not doing the internship and another online class so I have enough credits for financial aid. Then the next fall I will just have to retake the 2 classes for the program that I'm having to drop now. Then the next spring I'll do my internship, then I'll be done, hopefully. See He's still good. Great even.

Now the tube has been a different story. It's small. It clogs. My intestines are paralyzed for most of the time. So they don't work. Which means I either go to the bathroom too much or not enough (again TMI sorry). Either way they're is excruciating pain in my abdomen at all times. Even still after this amazing turn around since Thursday afternoon there is pretty much always pain there at about a level 7 and it shoots randomly to a 10, pretty frequently. But prior to Thursday I was living at a level 10+ pain in that general area 24/7 all the time. I am thankful for the relief. But I'm sad it's still there pretty frequently.

The GI doc has been worthless, the surgeon has been worthless. The geneticist is awesome but can't do anything because it's not his area. I call the GI and he says it's the surgeons fault, I call the surgeon and he says it's the GI's fault. I, personally, don't care who's blasted fault it is, I just want someone to fix it quite frankly. I am going to the GI doctor on Tuesday. But I'm pretty sure the appointment will be worthless. Just to be sure we get somewhere I'm bringing my mom with me. I NEVER let my mom in a doctor's appointment with me. But I am SO fed up with this particular doctor she is coming in because she's the one having to take off work all these days and drive me back and forth to all these worthless doctors appointments, and walk back and forth to my room to help me sit up because I can't do that without being in writhing pain, or trying not to puke while she's holding the bucket and flushing my puke down the toilet because I tried to eat food again (silly me), etc, etc. So she's going with me and we are hopefully going to get some answers and take him down.

The tube had been clogged for several days and I went to small group on Wednesday night and we prayed over it. Then Thursday, with it visibly clogged, I plugged it up and turned on my pump and lo and behold and worked. And my stomach hurt less. And everything just felt better. And Friday it did too. And I even got up early to go out to eat with my extended family. And wore real clothes. And did some stuff around my room. And today was even better. Like way better.

Today I got my entire bathroom re-organized and cleaned top to bottom. Re-organized my closet. Re-organized and cleaned most of my bedroom (just my desk left to do). Took an epidemiology quiz. Washed my sheets, my comforter, and all my clothes. Moved around some furniture in my bedroom (with mom's help). Took a shower. Ate some dinner (yay for real food!!!). And wrote this blog. And that's more in one day than I've done in 3 weeks. I'd say that's an accomplishment. Oh and I got an email that my thesis is approved by the IRB so I can finally start working on that!!!!

So now that everything is working out and starting to look a little bit more on the upside. I can see that the whole time He was still being good the whole time. He was giving me time to have surgery and heal by not approving my thesis til now. He was giving me time to work on it without the extra added stress of a whole bunch of classes by making me have surgery so I had to take a step back. He was making me rely on group prayer by making my tube clog and not having anything work and yet when I hooked it up in the same condition without unclogging it the next day it worked.

God is good, all the time. It's just that sometimes, it's just a little harder to see it. And it's in those times that we have to take a step back and lean on others to help us see the good. I'm glad I took these couple of weeks off from my blog. I needed to process and get right with myself and not be mad at God because I know that no matter what He is still good.